One Week Later

It's been one week and one day since our Jedi had his surgery. The feelings we are experiencing hold no definition. Since his surgery, he has had no (typical) seizures! (We don't count that "sort-of" seizure he had two days post-op because it was simply his brain reacting to the surgery) Can you believe it? We both can and can't. But we are grateful.

On our way home, last Saturday, the hubs caught me staring off in the distance. It was a strange feeling for me to not be in the hospital; to be out in the open, breathing real air, feeling the warmth of the sun. He asked me what I was thinking. I couldn't give him an answer. We concluded that as we drove further and further from our cave at UCSF, into the fields of Gilroy, and over the Pacheco pass, that we felt like Frodo Baggins at the end of The Return of the King.

This speech ran through our minds (feel free to end it at the 1:00 mark)-

How do we go on?  It's hard adjusting to 'normal' life when you've spent the last twenty months being overwhelmed and stressed to a point where you weren't sure there were any tunnels left... let alone light at the end of just one of them. Now that the moment you were so severely overwhelmed and stressed about has passed, you're really not sure what to do.

We are so thankful that God allowed us to continue being Renn's parents. Want the hard truth? Neither one of us were 100% certain that we'd be driving home with Renn sitting in his car seat. I realize how morbid that sounds. It was a thought, nonetheless. We never once told each other that we felt that way. But we both did... Especially on our drive to San Francisco.

Today, Renn is nothing more than "normal". He's bored. He's desperately wanting to leave this house. He's completely over this whole surgery thing. As his parents, we wish we could pack up and take our family on a glorious adventure. We recognize the gift that God has given all of us, and we want to shout it from the rooftops- WE ARE STILL TOGETHER!! ALL OF US!!!!

Our Jedi has changed in other ways. And this is something for all my Epilepsy family followers to have a hope in their hearts for... You see, Epilepsy gave Renn an almost severe ADHD affect (like it does countless others). He couldn't concentrate. He could barely do one task at a time, and could NEVER do a two-step task. During his neuropsychological exam, it was determined that Epilepsy affected his every day thought process. That broke our hearts. Over all, he is a smart kiddo. Epilepsy just made it difficult to recognize.

All that being said, Renn's concentration is starting to change for the better. The other day, I asked him to put his shoes in the laundry room, THEN make his bed. When he came back two minutes later, I recited my typical, "Rennnnnn? Did you do as I asked?" schpeel, and without question he answered, "Yep!". Sure enough, he HAD! I was blown away...

Another change is that he is QUITE emotional. I'm talking, the things that normally would make a toddler bawl? Those are the things that make Renn bawl. So that's an interesting adjustment, but I have a feeling it's temporary.

Last night Renn pulled out one of his (four) loose teeth... He said, "It won't hurt. I just had brain surgery... Nothing can hurt me."

Yes, I was crying. And, yes, he inspires me every moment of everyday.

We are thankful. We are still getting cards and boxes of goodies in the mail. It's so humbling. We can't wait to give back. And yes, folks... The Telles family will be giving back. There's no way a family can receive this much love, support, and encouragement without realizing how much they themselves need to give in return.

But just exactly how we will be doing that is still in the planning stages. As soon as we have it figured out, we will have a HUGE reveal... We can't wait.



As I wrap things up tonight, I have a few Epilepsy families that could use some prayer, tonight. Some have kiddos in the hospital and are facing the most God-awful decisions that could ultimately lead to losing their sweet angels, and some are trying to figure out what they can do to prevent their babies from spending Christmas in the ICU. We recognize that while what we faced was painful, scary, and heartbreaking, there are so many families who are contemplating their choices, tonight. And their choices are ones that you cannot fathom. So, as hard as you've prayed for our family, please take a moment and pray for these other families. Their stories are so familiar, and yet, not... I hurt for them. And we long to be near them to help them through.

Now, here's to another seizure FREE week!

 

Love to all of you...

 

Enter his gates with thanksgiving
    and his courts with praise;
    give thanks to him and praise his name.
For the Lord is good and his love endures forever;
    his faithfulness continues through all generations.

Psalm 100: 4-5



Grid Placement: Day 12... LAST DAY!!!!!

It's been twelve nights... And in those twelve nights, the Telles family, as we knew it, changed forever.

I started this blog back in December of last year. I looked back at my FIRST POST, and noted all the misinformed facts I relayed: I said Epilepsy was a disease, I said that an MEG was scary, I said we weren't sure we could do this.

Now I am sitting here in a not-AT-ALL-private "room" on the regular floor , desperately missing our PICU family (I'm refusing to complain about being moved out of the PICU, however... it means my kiddo is well!), looking at my son who is sporting this giant battle scar. This surgery was exactly eleven months to the date from when we learned this it was even a possibility. I'm shaking my head at all the things that have happened: all the tears that have been shed, arguments started, arguments ended, family lost (both literally and due to stubbornness), victories made, friendships blossomed, and lessons learned. And you know what? We're finally ready for the life that is ahead of us.

Renn walked to his new room earlier this evening. And yes, I cried on the inside. Soon after, we walked the halls so he could stretch his legs. He was so proud. He waved to and smiled at others, told a patient on a gurney, "I hope you feel better!", and all but skipped his way around like he owned the joint.  My Jedi... made sick people smile, two days after he had a GIANT surgery. My heart was so happy. And then I got hit in the gut.

I watched people as they looked at my son. There was fear. There was pity. And I realized that soon, we would be out in the world... the real world. Not in some hospital where for the most part, people are used to seeing major injuries. I felt like I was falling backwards... in slow motion. And yet, here was Renn, blissfully unaware. I know I need to take that approach. But I'd be lying if I said that was going to be simple.

Just before our dinner arrived, Renn spaced out. I didn't recognize this face. He was stone still. He wasn't blinking, or talking. He was seizing.

I asked him what his favorite movie was. "I don't remember." Crap.
I asked him what school he went to. "I don't know."
Eventually, he was answering questions correctly. But he kept saying, "Mom, I'm fine, I'm fine! I was just cold, Mommy. I promise."

After a long talk, he broke down. He was embarrassed and ashamed... He actually recognized that he had had a seizure. I told him how it wasn't his fault, that we were to expect these little guys for a couple days or even a couple weeks post-op. BUT that they WOULD go away! He kept saying how sorry he was... No, son. I'M sorry.

I can say one thing... We're 99.99999% sure we will be heading home tomorrow. Starting then, we will know how life will resume.

Based upon how unsure I was about facing the year ahead, one year ago, and seeing God completely take over and bring us here? I have a great feeling about what's to come. We are blessed. We have two, incredible, strong, BRAVE children who can handle each curve ball thrown at them. They will be men who can provide for their families and think under pressure. We went through this year for a reason... I can see some of those reasons slowly unfolding already, but the rest is unseen. And that is where faith comes in. And faith is the number one lesson we've made a commitment to learn.

Thank you ALL, for reading, and praying, and sharing, and calling, and texting, and mailing letters, and going to the extra mile to make our son smile. Our faith in God's plan and your love is what got us through. We are ever so grateful!

Sometime next week I will be posting two VERY important posts about two GIANT pieces of our weeks here at UCSF. Number one: Eli Nathanael... The brother that stood by Renn each day, who held his own and rarely complained, who acted like a ten year-old at the age of four- all because he could read the tension. HE deserves so much... And I'm going to tell you why!
Number two: The wonderful, incredible staff in 6 PICU South. I will be sharing stories in more detail, and will give you insight as to why a great medical staff makes all the difference in the world.

Once again, thank you for taking this journey with us. We are a long way off from being in the clear, but now a new understanding begins.

From us, and our sweet Jedi,
God bless you all...

Then they cried to the LORD in their trouble, And He brought them out of their distresses. He caused the storm to be still, So that the waves of the sea were hushed.

Psalm 107: 28 & 29

Grid Placement: Day 11

Tonight is our last night in the Pediatric Intensive Care Unit... I can't wait to share and go into greater detail about all the staff that has been taking care of Renn. They have truly become part of our family (three nurses came in and said goodbye to us with tears in their eyes); we couldn't have been more delighted with his care.

Tomorrow morning, Renn will be moved to the regular floor. We were released to go today (hello, ONE DAY AFTER brain surgery!), but they didn't have enough beds. Personally and downright selfishly, I am thrilled to be moved! People, this means that we get our own PRIVATE bathroom. Now that may be TMI, however, if you only understood what it's been like to leave my child, walk alllllll the way down the hall, use the restroom, come alllll the way back, recheck with security (no matter what time it was), and THEN get back to my room... MAYBE you wouldn't think I was selfish.

Renn is stoked about the PS3 and big TV in the room. Go figure.

He had a great day, today. The emotional rollercoaster continued, as the hubs and I did all we could to remember that this wasn't Renn. This steroid is bananas. The smallest of things would upset him so immensely, I couldn't even tell him I loved him more than once. I won't lie, the hubs and I were a bit disappointed. Maybe that was our fault for being overwhelmed with joy, last night. Maybe our expectations were too high. But the fact that Renn could still read, still function, and still complain? I vote it's still a win. He had his PICC line removed, and was able to stand up. That was ALL he wanted to do.

Renn had no seizures... Not even in his sleep (that I witnessed). So that means... Day 1, seizure FREE! We are rejoicing every milestone. And we're going to milk it as long as he breathes air. His face isn't swollen, either. He's already defying the odds! Yep, we're celebrating. We don't believe in jinxes.

Dr. Incredi-Surgeon came by and asked Renn if he could show him how to play Angry Birds. Renn's face, as usual, lit up. It lit up anyway when the good doctor came into the room. But to have that interpersonal connection... I just thanked God for him. We could have had any number of surgeons here. But we got him. No coincidence... Just God's love.

The doctor said Renn looked fantastic and he cleared him to wean off the steroid and move to the floor. We will be seeing him in two weeks for wound check, but basically, we said goodbye.

As the day went on, Renn slept... A LOT. I mean, this kid is tough, but he's not invincible. He wasn't. They had heard about our Jedi, and wanted to send their well wishes.

even on pain meds other than Tylenol. When he did wake, he had a big brown box waiting for him. As excited as he could be, given the state that he was in, he ripped open the box... It was from his classroom back at home. Holy. Moly. This momma could barely keep herself together. There were more hand-made cards than I could count. Star Wars books galore, including this AWESOME pop-up book that looked like a dream! Not to mention, Master Yoda... My goodness. His Kindergarten teacher included some goodies (and a note that made me cry like an infant), and another class from his school wrote many, many sweet cards. There was even another notebook filled with letter after letter from a school that was in another town







We wanted to send a BIG thank you to Mrs. Johnston and Room 1 for loving Renn so much and for spreading the word about his hospital stay! The words you all wrote, the depth at which you all went to give such a beautiful gift was astounding. Renn LOVED all the drawings! And when we get home, we are going to put them in a VERY special book, so we can look at them everyday. You made him so very, very happy. He can't wait to come back to school. Thank you, all!!!






Tonight, Renn sleeps with no grids. No PICC line. No 2hr Neuro checks. He fell asleep by 7pm, and really good sleep. Finally."
the last thing he said was, "Mommy, I'm going to get


You know what? He's probably right. If you guys could have seen what the EEG monitor looked like while he was sleeping, it would have made your heart hurt. I think, for the first time in years, our son had the most peaceful, solid sleep ever. I was both encouraged and devastated. No wonder he never slept well! His brain only got MORE active as he was sleeping. But now, now that wasn't going to be the case. Score 18,457 for surgery. ;)

I am in awe of how it feels to be on the other side of this. I have a hard time coming to terms with it, but I don't think our Jedi does. Granted, he's only six, but he still seems to understand how basic a need this surgery was. And that's something God kept trying to teach us. Something the hubs and I just felt was impossible. Yet, here we are. I feel like I'm in a much more sane Wonderland, but that we're still stuck there. I suppose it won't feel real until we get him home... which might be in a matter of three days max. MAX!

I'm off to cuddle with my near-wireless child... But know that this journey has inspired the Telles family to change in a major, major way. More details to come as we pray and prepare our hearts for what God has planned for us next. Just know that Epilepsy has made its mark on us. And we don't intend on forgetting that.

And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong;

and you shall be like a watered garden,

like a spring of water, whose waters do not fail.

Isaiah 58:11 

Grid Placement: Day 10- A NEW HOPE

"Mommy? Mommy? MOMMY!"

"Good morning, Renn."

"Is today surgery day? Is today the day we get rid of seizures, Mommy?"

That is how my morning started. I'm not going to lie, I was exhausted, but ready. Renn was ready. I put on my Star Wars shirt, greeted each medical personnel that came in our room to wish the Jedi good luck, and waited for the hubs, Easy E, and my father to arrive.

An attending surgeon came in to mark the right side of Renn's skull... I made some lame joke about not marking the wrong side. She didn't laugh. I didn't either. My stomach was starting to hurt.

The hubs, Eli, and my dad came in, then the technician (whom we've grown to love) came in and removed all the leads. Renn just about jumped out of bed. He could move his neck... He was free!

But then it was time to go. It was a hazy walk for me, as I don't remember even doing it. So much was riding on this... Would he still be Renn? Would he remember me? Would he still laugh the same infectious way, care for little children like he does, love nachos, or be able to see? Was this the right choice? His seizures weren't that bad... were they?

As we swung his giant hospital bed into the waiting area, we met up with all the appropriate people...

We answered all the same questions, but I could tell that I wasn't even listening to the nurses ask. I simply answered out of habit and memory. I wasn't there. I was numb.

The Mighty C. helped get us down there, and gave Renn an assuring pat. He promised he'd be there when he woke up. Renn smiled wide. Soon, Dr. Incredi-Surgeon walked through like the celebrity he is. I swear, mini confetti cannons follow that man around. He'll enter a room, and everyone in it is in awe of the sheer compassion he has for his patients. Renn lit up. Dr. Incredi-Surgeon gave us the pep talk. The hubs and my father seemed to listen. I vaguely remember asking the good doctor if he went to bed at 7pm as I'd demanded he do. But I was too busy thinking about the baby I carried within me, and how the brain that formed in my womb was about to be changed forever.

Before I could snap out of it, we were all kissing Renn goodbye. He'd already been given a calming medication. He was pretty loopy. I held it together for him. I kissed him, and prayed, Father... stay with him. Stay with him, because I can't. Renn asked if we were leaving him forever (thanks, drowsy med). I swore I would be there, that I'd never leave, and he disappeared behind those infamous doors. We've watched him be wheeled or walked back through that entry way four times now. Today was the first time I had to be asked to "go ahead and exit this way, ma'am". Didn't that nurse know what they were about to do? Did I even know??

We headed to get breakfast. I wanted to hit everyone close to me. I hated that my husband was upset.
But I honestly wanted to be left the hell alone. I wanted to call my mother... I needed to hear her say, "Bethie, he's going to be alright." It broke me to know I couldn't even do that.

Thankfully, we managed to have short conversations about I-don't-even-know-what. The hubs, my dad, and myself all handle life-altering circumstances a bit differently. I was grateful for that, today.

My father took Eli to the park while the hubs and I went to wait in silence. We found that silence just left us to our own morbid thoughts. It didn't last long. We couldn't hold still. We got our second (or third?) round of extra strong caffeine and found a balcony to sit on. We started to talk about what we wanted to get the kids for Christmas. It was a glimmer of happiness... but eventually, the nurse called. They were beginning the resection. They were removing a portion of our baby's brain. There was no coming back from that blow. We sat. We didn't speak. I watched a napkin flitter on the floor in the breeze. Rick closed his eyes to pray. Eventually, we started talking about all the ways God has led us here... And before we knew it, it was 1pm, and we were hungry.

After lunch, we waited with my father (E got to go to the playroom with ChildLife, but eventually got sick with worry, and came to join us). It felt like minutes before we got the call. They were done, and
just putting our Jedi back together again. It'd be another one to two hours, but he was steady. He needed NO blood transfusion. He was okay.

Doctor after doctor, the Mighty C, and then two other nurses, all came in to announce that their our kiddo was done, over the course of the following fifteen minutes. And I can't explain it, but we felt... Free. 

Dr. Incredi-Surgeon bounced in about two hours later. He was beaming. He explained precisely what he did, how much tissue he removed, and gave us our odds on MANY different questions we asked. Then he asked if we wanted to see pictures... We (because I'm the daughter of a realist, the wife of a scientist, and just one curious, probably insane mother) said yes. He brought out his camera. I saw the first picture of what looked like a Halloween decoration I've wanted to buy for years (which I will NEVER buy, now). He showed us what he was talking about, and then showed us the "after", with the 50% of our baby's Temporal Lobe missing. I have to be honest... I got sick. I collapsed, on the inside. I felt no peace. I felt tormented. I felt guilt. I felt like I'd lost him. Like it was my fault.

At that moment, a familiar face walked in and asked if we wanted to come be with Renn; that he was waking up. Not wanting to miss the opportunity to remind our son who I was, I got up, hugged Dr. Incredi-Surgeon, mumbled some form of "thank you", and RAN.

I got to the door of Renn's room in the PICU. The same room we'd been in for nine nights. I pushed through somebody to get to him... I grabbed his hand, and began to sob. He looked perfect. The hubs came in within seconds as I said, "Renn? I'm here. Just like I promised. Daddy's here, too. Can you open your eyes for us?"

He opened his eyes.

He took a breath, opened his mouth, and CLEAR AS DAY asked, "Mommy, is the surgery over yet?"

Praise you, Father. Praise you on high...

He remembered me. He turned and said hello to Rick. He remembered Daddy. Then, he asked, "Can I play the Wii?" We laughed... it felt so good to laugh. We asked him his favorite movie. "Star Wars, of course."

Our Jedi was still... Him.

He blew us all away. He was awake fifteen minutes, and he was up and playing video games with the hubs. He was begging for food, he wasn't swelling, and when asked about his pain level? "Zero." he promised. There must have been about twenty-three different nurses, doctors, and staff who came in wanting to see if the rumors were true. This kid was like nothing they'd ever seen before. I couldn't help but think about what Dr. Genius had said yesterday, "I've never seen a case like his. Ever. And if any one of the Neurologists I know all across this country and into Canada had had even one case like his before, I'd have sent you guys to them."

Well, I suppose Renn is going to continue to baffle you... He's going to show you what the power of God can do.

The rest of the evening went smoothly. He ate five popsicles, tons of ice chips, chocolate milk, and was then FURIOUS he couldn't order pizza for dinner. The steroid he is on (anti-inflammation reasons) makes him belligerent. Picture a young, extreeeemely intoxicated, sorority girl whom has just found out her boyfriend is cheating on her. That was Renn. He felt fine, but was so very emotional! He got unbelievably upset that his blanket dare leave its spot that was covering his toe. And he also said, "Mommy, I'm so mad you won't let me go on the airplaaaanneee! Whyyyy won't you let meeee???" Then he asked if I'd brought the croutons.

I only saw the humor (not at him, of course, but merely the situation). Again, I felt so free. It felt amazing being able to laugh and not feel guilty for doing so.

He is sleeping peacefully after wanting to make a few phone calls to loved ones. And I am in awe of God's gifts. God's splendor. God's miracles. Renn hasn't even begun to swell (he WILL, but it hasn't started yet... nothing like this time, last week). Our heavenly Father did this. I have no doubts... Never, ever again will I second guess His plan.

I realize how premature that statement may be, because surely, we are not out of the woods, yet. But we will be going to bed tonight with all this behind us. Now, the hope begins. And just like in Star Wars, a new hope starts what will become a legendary tale...

Here we go, young Jedi... Here we go.

 

"For I know the plans I have for you," declares the Lord,

"plans to prosper you and not to harm you,

plans to give you hope and a future."
Jeremiah 29:11

Grid Placement: Day 9

 

"For everyone who has been born of God overcomes the world. And this is the victory that has overcome the world—our faith."

1 John 5:4   

 

 

WE HAD ENOUGH!!! THE WAIT IS OVER!

Tomorrow, 8:30am PT, our Jedi will go into (prayerfully) his final battle with seizures. He has had a grand total of six seizures captured, none during the day- which wasn't ideal, no, but they did the job. But that's not what we are excited about...



Temporal Lobe

Dr. Incredi-Surgeon was the first to come in. He had a giant smile on his face and a champion aura
about him. He explained to us that Renn was all set for surgery; that he was ecstatic. He felt confident, and let us know what tissue, precisely, he would be taking out. He said that the area where Renn's seizures are stemming from is the lower part (Inferior Temporal Cortex) of Renn's temporal lobe. And... That's the ONLY part they will be removing.

It gets better.

My number one fear about this whole surgery was that Renn would wake up and not know who we were. That he wouldn't remember his love for reading, his favorite jokes, or even... Star Wars. I have been so scared about memory, I compiled a little album in my phone of the faces of all the people he loves... I didn't want him to forget. But, Dr. Incredi-Surgeon (who did NOT know of my fear) informed us that because we were not going to be removing his entire temporal lobe, Renn's memory would NOT be affected. The Hippocampus (the part responsible for a lot of memory) will remain intact.
Praise you, Jesus.

 Dr. Incredi-Surgeon told us that Renn's odds of never having another seizure was 85%. WHAT??!! We were over the moon. I cried. The hubs cried. We knew... This was God. This is what we've been waiting for.

Funny thing about when God does something amazing in your life... It can take days, it can take hours, or- like in our case- it can take mere minutes before Satan likes to swoop in to give you doubt.

Good grief... Did he ever.

Not too long after Dr. Incredi-Surgeon left, Dr. Genius and the team came in. Their faces were serious and, dare I say, solemn. I nervously tried to make smart-aleck comments. No one laughed. Before I knew it, the air got sucked out of the room, and a very different conversation emerged. The team let us know that while the lower part of his temporal was definitely the starting point, their concern was the other areas that seemed to spark off when Renn would seize. They said that basically, there was NO guarantee that Renn would get better. Dr. Genius said that they had never, EVER had a case like Renn's, so there weren't real honest odds to give. But they gave us a 60% chance of success, and better odds that the "dormant" parts of his frontal lobe might trigger off and he would have seizures again at some point in his life.

You know what? I was mad. No, I was furious. In my heart, I knew this wasn't true. For some reason, I didn't feel like I was talking to the people we knew and trusted. Something felt so... so empty when they were speaking. Their eyes looked hallow. No depth... No twinkle of hope. I looked at my husband who was about to fall to the floor. He was defeated. That angered me more.

As they left with a, "Well, let's hope for the best." kind of attitude, Renn noticed a difference. He seemed cautious about the whole thing, where as before, he was confident.

It was time for God to show us that the peace we felt before was still there. We talked, and talked, and talked. And we came to the same conclusion... God wouldn't have led us here, if He didn't want something spectacular to happen. We have exhausted every medication available, Renn has taken every test possible, we have put thousands of miles on our car, spend hundreds in gas, hundreds in parking... we've shed more tears, held one another closer and closer, witnessed a complete change in our strength as a family and in our trust in God. We are here for a reason. Renn is here for a reason, and his life is going to make an impression on many. This is his story. And his chances WILL be 85%. Bar none.

So, let's pray together... Tomorrow is the biggest, most terrifying and exciting day in our six year old's life. Let us pray that God will protect him. Make up for the lost tissue. Seal off the "dormant" areas so that they stay dormant forever. Strengthen his mind and his heart. Keep him smiling. Keep him brave and confident in who he is. Give him a chance at life seizure free.

Stand with us. We will be wearing our Star Wars shirts for this Jedi who has shown us what heroism, tenacity, bravery, and strength looks like. We will be standing for him, and praying the entire 10+ hours he will be in surgery. This is the day we've all been waiting for... Tomorrow, this nightmare will be over.

May The Force Be With You, our sweet Jedi... Daddy, Mommy, Eli, and sooooo many others love you. We believe in you and who you are. We trust that God will carry you through, and this will enable you to lead others even more. You were given the name RENN for a reason... It means leader of men. You have people all over this world following you, son. We are so proud of you. Now... let's punch the Epilepsy out.

“Before I formed you in the womb I knew you, and before you were born I consecrated you; I appointed you a prophet to the nations.”

Jeremiah 1:5

 

Grid Placement: Day 8

To try and squeeze the last twenty-two hours into a blog post almost seems impossible. My heart has gone through so much, a part of me would love nothing more than to climb to some immensely high mountain top, and scream until I lost my voice.

When I closed my laptop after I shared last night's post, I just sat on my little pull-out bed and, well... sat. What had we done? Who were we kidding, when we thought this was a good idea? My child is quite literally going through hell, FOR. WHAT?!

And then he seized again.

You know what was left for me to do? I pushed the seizure button, told God "I give up.", and went to sleep.

"Mommy? Moooommmmy?"

I looked at the clock. It was 4:12am. Renn had to use the restroom... Wow. I got three solid hours of sleep! Thank you, Father. 

As I helped cover Renn back up, I noticed an odd something on his headdress. For a second, I thought an article of clothing had attached itself somehow. Then I realized... It was red.

Every expletive went through my mind at once as I tried to look calm for my child. "Mommy, my head kind of hurts."

Oh no, no, no, no, NO!

I frantically looked for the stupid nurse call button, but thankfully one walked in because he heard

Renn's pulse oximeter beeping. I showed him, without saying a word (remember, Renn was still awake!). He looked, and then he called in the brigade. After I called the hubs and sent out a message to all my praying friends, I began to beg. I begged God to just take over. I begged and I pleaded for Him to come into this hospital room and show me that this was his plan. SHOW ME! I was too scared to be angry. I just wanted to know that this entire time, we were truly hearing Him and were following his plan.

The Neurosurgeon on call (not the nicest guy in the universe) came in, looked at Renn's incision for LITERALLY (yes, I counted) four seconds. Then he said that it looked good, and it was no big deal.

Now, I knew that leakage was normal. I  was a smart girl and I did tons of research before we said yes to this. However, a WEEK after the surgery? And mere hours after a large, crazy seizure that caused my kiddo to... No. This guy was not allowed to just say that it was no big deal. However, a nurse whom I've connected with came in and talked me down... She felt badly for the way I'd been "handled" and she said she was just as nervous.

After she left, I sat in the dark and once again I found myself calling out to God. This time, all I wanted to know was that He was there. I wanted to know that He was in our room, and that His little boy was perfectly safe. Then, Renn's heart rate went low and steady... I heard God say, "I'm here." Almost instantly, I fell asleep...

As the day went on, the hubs and Eli came in, and we told everyone about all the events that Renn had had. Dr. Incredi-Surgeon came in and let us know that we were on the schedule for Friday, but that he was going to try to get it moved to Wednesday. It was all dependent upon what Dr. Genius and his team had decided to do. Soon, I got a call from one of the Neurologists. She basically told me that we were a go for resection. A GO!!! But they wanted to meet with Rick and myself to discuss options.

We waited. And waited. And waited.

Renn had his first Physical Therapy session to help with his neck situation... As you can see, he has A LOT coming out of his skull. All of those wires and that big black bag weigh roughly seven to ten pounds. Renn only weighs forty-seven pounds. He felt better after it was over, and quickly found himself tired enough to take a nap.

Within the hour, he had two seizures in his sleep. Rick and I looked at each other... It's over.

Soon after we danced around the PICU  told The Mighty C, we found out that Dr. Genius and his team had pushed back our meeting until tomorrow. We would have to wait just one more night to know for certain... Blimey.

I can guarantee that this will be the last post where there won't be an answer about what to do next for our Jedi. While that is thrilling, it's also terrifying. But God is so present... I realize that I threw a gnarly temper tantrum in my fury and fear. However, God grabbed ahold of me last night and reassured me. He's here. He's with Renn. He's with the doctors. Each decision will lead Renn to be the MAN he is to become. Who are we to stand in the way? Once again, I go to sleep filled with both innate fear of the unknown and a great sense of calm. No one could ever understand that unless they've been through a life-altering situation. And I get that now.

Until tomorrow...

"Answer me when I call to you, my righteous God. Give me relief from my distress; have mercy on me and hear my prayer."

Psalm 4:1

 

(Thank you, Rebecca, for sending me this verse today)

Grid Placement: Day 7

Hi there... I am going to be honest and say that I am just too tired to write a full-blown (with beautiful pictures) blog post, tonight. Usually I write them directly after Renn falls asleep, but even after the near 2hr nap I got this afternoon (God bless that amazing man I married), my body is starting to shut down.

Quick highlights:

- Renn was happy and fun to be around, today! We had an incredible nurse the night before, and a super fabulous one today... Boy, it sure makes SUCH a difference.

- Cousins came back, brought games and books, and made the day so much more delightful. Renn even got emotional when it was time for them to leave.

- Our precious Jedi began to cry, and apologized that he hasn't had any seizures. It. Killed. Me.

- Found out that he will be getting physical therapy for his neck, starting tomorrow... The weight from all the leads, wires, and giant "boom box" that holds everything together, is causing a real strain on his sweet, tiny neck. Super.

- After he had been asleep for about an hour, he had a HUGE seizure in his sleep!! I am praying that this one is good enough. It was far more "typical", although he wasn't awake. But it was full of right arm movement, spasm-type movements, lip smacking, and the whole shebang. He was actually completely unresponsive to me,  (no, I am NOT okay about that). So here's to them saying "We have enough!", and us progressing to the next step.

Thank you for the constant messages, texts, and prayers! The hubs said that the Ronald McDonald house is a true blessing, and both he and E are incredibly happy to be staying there.

Come on, week two!

"Count it all joy, my brothers, when you meet trials of various kinds..."

James 1:2

 

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UPDATE

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I wrote this post at approximately 10:00pm. As I was getting ready to hit the "publish" button, Renn called out to me in a state of panic. As it turns out, that seizure that I initially saw may have lasted a whole lot longer than I had thought. As in, maybe closer to ten or even fifteen minutes. It caused him to do some involuntary things (which has NEVER happened before), which made him so broken and upset, he began begging to go home. Please pray that this was enough. Our brave Jedi shouldn't have to deal with this any longer. Pray for his heart to stay strong, and that he truly doesn't remember these moments as he looks back on this.

 

My sweet boy... I am just so, so sorry.  

Grid Placement: Day 6

Zzzzz... Zzzzz... Zzzz...

Oh! *ahem*, I didn't see you there. Pardon me... I stayed up entirely too late last night. But, I'm glad I did. I witnessed Renn have a SEIZURE!!! Now, before we get too excited, it was in his sleep. As I've said before, the doctors are looking for his "typical" seizures. But from the seizure last night, it looks as if we really are going after the Temporal lobe. Remember all that language mapping? They found his language skills to be stemming from the Frontal lobe... SO, if Dr. Genius was correct all along, Renn's speech won't disappear after the surgery! We're still praying... We need "typical" seizures.

Our Jedi had another good, albeit seizureless, day. He was alert, laughing, happy.

And then, the IV in his foot started hurting. His nurse decided it was time we talk about getting

a PICC line... I decided that even though he'd need to get "poked" again, it would be for the last time. We could do his blood draws (which are being done daily) and give him all his antibiotics from ONE place... So, we went ahead with it.

The dude was a champ. His nurse tried to give him Dilaudid (the synthetic form of Morphine- which is what he was given coming straight out of surgery) BEFORE the PICC line was placed to "calm him down". I get it, some kiddos need to be sedated. But when you're trying to encourage seizure activity, sedating the child makes no sense, especially when that child is mine. Give that boy an iPad, and he'll do just fine! I straight out argued with the nurse about it, won, and was proven right. Our brave Jedi barely even flinched as he played Angry Birds on the iPad.

Score #2 for Momma.

Renn also had some VISITORS, today!!

That's right, all the way from Southern California, his Aunt, Uncle, and three cousins came to spend some time with him here. And for them to drive over seven hours to be with us? Wow... We will be getting to see them tomorrow, too. We are blessed, and beyond lucky to have some family who love us.


Eli is also lucky, because he is GLUED to his younger cousin, so playing today was the most fantastic reward to a week of support well done.

 

We do have some not-so-fun news, of sorts.  Apparently, Renn's red blood cell count is a bit low. Declining, in fact. And the iron within the ones he has, is low as well. He may get a bit of a transfusion tomorrow, or just before surgery, or not at all. 

It's not the antibiotic causing this issue (though it's looking like the Vancomycin count is actually TOO low, so we may need to increase dose a bit). But it is either due to what he lost during the first surgery, or due to diet. Either way, they aren't super concerned. But they are keeping an eye on it. Luckily, the hubs donated a few weeks ago for this very reason... At least we were prepared.

 

Happy daylight savings time! So, technically I'm not staying up waaay too late again... It's only 10:45pm!!

 

 

God be with all of you... Thank you for your continued prayers.

 

            

"Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!"

Psalm 27:14

Grid Placement: Day 5

It's officially here! November is Epilepsy Awareness month!!! So, wear a purple ribbon, and tell everyone why! The whole goal of this blog is to not just share our journey, but to also inform the uninformed. One in twenty kiddos have a form of Epilepsy. That's CRAZY! The more we know, the more we can do to "Punch the Epilepsy out". So let's do it together, okay?

Well, not too much drama happened today (aside from a busted IV line that caused major pain and swelling in his right ankle), but definitely NO SEIZURES. We did another round of the language mapping, and man... Renn is literally the bravest kid I know. He was afraid at first, but when Dr. Genius talked him through what happened yesterday, Renn said, "Okay. I can do this. Let's get this done!"


They had him read the same Star Wars lines that Dr. Genius had written up, yesterday. After a while, they got to a place where Renn stopped reading, looked up, and was pretty panicked. He said he could feel the "shakes" coming on, on the inside of his head. They began a new approach, and had him specifically tell them when he felt things. They had him say, "on" and "off". At one point he felt things in his teeth on the left side, and then another time his left thumb twitched without his "permission". That scared him a bit. He not only felt it, but he could see it as well. It was bizarre.

He got through it though. And now the waiting continues. We are just waiting... and waiting... and waiting... All we really need is two or three seizures. That's it! So we are praying for those to come in abundance, this weekend.

Renn was alert and happy today! He ate more amounts of food, he was sitting up on his own more and more- even sitting in this chair for about forty-five minutes! He did a great job, even when he was in pain due to the IV malfunction. Daddy brought Renn some Halloween candy (made mommy cry!), and boy oh boy was he excited! So what did our Jedi turn around and do? He passed it out to a few of the staff that were taking care of him (made mommy really cry!)...

He continues to amaze me. His heart and love for God shine through him, even when he's in pain.
Today, he proved that by not just giving away his candy, but by also telling certain individuals that he liked them, or that they meant a lot to him.

I know you can't see this nurse's face, but he is our Jedi's favorite. We will call him Mighty C.  Mighty C. continuously goes above and beyond for Renn... Our precious Jedi won't do much unless he tells his favorite nurse first. If something scary is happening and Mighty C. is elsewhere, Renn will cry and say, "Where's Mighty C.??" Today, while Renn was getting a new IV put in (which was attempted twice before they finally got it on the third try), Mighty C. held Renn's head and sang to him. He is a daddy to a little one, with another on the way. He makes Renn's stays so much easier... We are grateful and thankful for him.

Eli is also continuing to amaze me... When this is over, I plan to dedicate an entire blog post to him because I believe the world needs to know what a brave, reliable, and wonderfully strong brother he's been this week. He comes in with a smile, with a hug, and then goes straight to his GameBoy (hey, he is only four! ;) ). But we are thankful for him. He painted a picture for Renn, today. I can't wait to share it with all of you, and what he said when handing it to us.


One prayer WAS answered, though! Rick and Eli got offered a room at the Ronald McDonald house!! And just in time, too. Now that we have to stay longer, we were pretty sure that they would have to go home until it was time to pick Renn and me up. But, God provided! He must really want us here!

Until tomorrow, friends... This Jedi is out like a light, and his momma should have been in bed hours ago!

 

"Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus."

1 Thessalonians 5:18

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If anyone would like to write to Renn, you may totally do so! I will not post the address here, so please email me at bethany [dot] telles [at] ymail [dot] com and I will send it your way. Thank you!!