Charlie's EEG

Tuesday, February 16, 2010

On Thursday night we kept Charlie awake 2 hours past his bedtime, and then on Friday morning, we woke up him up 2 hours earlier than he would normally wake up. At first he struggled to open his eyes, leaning his head against Daddy's shoulder for extra support. As soon as he settled into a functioning and somewhat playful awake mode, we started getting ready for the long day ahead of us.

I made a batch of chocolate chip pancakes for Eleanore to take with her to her friends house for breakfast. My friend Marisa had emailed me and asked if there was anything that they could do for us, and though I hadn't thought about up until she asked, it would be really helpful if she could watch over Eleanore so she didn't have to go to the hospital with us. It was either Christopher stay home with Elie while I took Charlie alone, or Eleanore come with us. All of the doctor visits were really starting to effect her, and as hard as I try to talk about little brother as being "just fine", with a smile on my face, Eleanore is a smart girl, and she sees right through it.

The other day I overheard her playing with her pony dolls in the living room. "Oh no, she had a seizure! We have to take her to the doctor!", Eleanore shouted, in her high pitched innocent little girl voice. It was at that moment that it all sank in. I can't keep things from her, no matter how hard I try. She has eyes and ears, and she'll pick up on things, in her own way, no matter what.

So I prepared bags for both of the kids, one for Elie to take to her friends house, full of sippys and snacks, and one for us to bring to the hospital with us for Charlie- I had no idea how long we'd be there, or what we'd need.

Eleanore was anxious to play with Gracie and Annelie, their house is like a great big adventurous playground for her. The girls keep her on her toes, and shes always got so much to talk about after shes had a visit with them. Dropping her off wasn't difficult, she had said goodbye to Mom and Dad mentally before we had even gotten there.

I had a heck of a time keeping Charlie awake on the drive to the hospital. I had turned around in my seat, tickling and bending his arms and legs, singing silly songs, talking in silly voices- yet somehow he managed to zonk out anyways. He couldn't have been asleep-asleep for more than 5 minutes though, so as soon as the car stopped I flung open his door and yelled "No sleeping tired baby!". I startled him awake with my loudness, and then rather than getting a blanket to wrap him up in the below freezing temperatures, I pulled him out in just his pajamas. Try sleeping through that, little guy.

For anybody reading this, who might be unfamiliar with whats been going on, you can click here, to read about our son's recent surge of yet to be explained seizures.

The hardest part of the EEG, was getting set up. We went into a hotel style hospital room, set up just for sleep studies. The blinds behind the tacky curtains were the thick blackout style. There was a large fan on the wall across from the bed, which looked almost exactly like a bed pulled directly from a comfort suites brochure. There was a single chair sitting next to the bed.

Christopher was holding Charlie when we walked into the room, and the nurse asked him to have a seat with the baby. I chimed in, announcing that I'd be taking the baby, we made the switch, and then I took my seat. Christopher didn't argue, I think he knew that I'd have to be the one rocking the baby to sleep when it came time, or I'd go crazy.

I was told to hold down Charlie's arms with my arms, and to hold down his legs with my legs. I held them firmly in place, so that he wouldn't be able to move, no matter how hard he tried. Christopher knelt on the floor in front of us, looking directly at Charlie, using his hands to hold his head in place. They told us we had to hold Charlie as still as possible, no matter how hard he cried. At first it was easy, Charlie was being a good sport, letting them scrub glue onto random parts of his head without questioning. But as soon as he realized that he couldn't move, the more he wanted to move. He tried, and we wouldn't let him. He screamed so hard he couldn't breathe. He screamed so hard I could feel him shaking. I could feel his body temperature rise, and I could see his skin change color. This entire time, all I could see was the back of his head. Christopher is the one that had to look directly into his eyes and watch him beg to be let go. As soon as I felt a tear start to well up in my right eye, I quickly choked it back, knowing that now wasn't the time. I replaced my tears with lyrics to Old MacDonald and the ABC song, hoping to slightly distract Charlie from the constant scrubbing and tugging that was going on around him. Mommy and Daddy holding him down, while 2 complete strangers poked at him. It seemed to go on forever.

Eventually, all of the wires were attached, his head was wrapped, and the nurses were leaving the room. They had pulled up a few more chairs, one for Christopher, and one for me to put my feet up onto. I had decided not to move into the bed, but to just rock Charlie to sleep right there in that same chair, diving directly into comforting him. I held him tight and I sang songs of love.

As the nurses left the room, they turned off the lights. And then, I was able to cry. Charlie couldn't see me, he was floating off to sleep in between the sounds of mine and Christopher's humming, and if I cried quietly enough, he'd never know. It only took about 5 minutes for me to get it together and go back to singing him to sleep, and soon Christopher and I were able to whisper freely to each other while the babe was drifting into dreams, his Lovey nuzzled against his face.

When the 30 minutes of readings were over, and the nurse made her return, Charlie was very unhappy. If I could translate his cries into words, I'm sure he would have been saying "turn the lights back off! Mommy, don't stop singing! Lovey, wheres my Lovey?! Everybody leave me alone!". They took the dressings off of his head, removed all of the wires, and then with a sponge and some baby shampoo, did their best to scrub off the glue.

We were all very relieved when it came time to check out. Being in the comfort of our own car, even though its much too small and barely holds us, on the way to pick up the missing piece of our family (Miss Eleanore of course), the baby headed back to sleep in the warmth of his car seat...

One step at a time.

Edit: For those of you bashing me over at (thank you, to the poster that sent me the link)- my child was in no pain, while I took the picture of him crying. I took the picture just as he was waking up, right after they had turned the lights on and lifted his head dressing. His eyes were still closed when I reached for the camera. He was crying because he had been woken up, not because he was having a "surgical procedure". I snapped one single shot with my lens, and then put my camera to the side. Feel how you'll feel, but please don't go behind my back to a message board, to call me a monster.


AlyGatr February 16, 2010 at 5:42 AM  

I'm so sorry that was rough beyond words...and am glad it's over with. I pray you have the answers you are looking for soon...and that all of it is better than you imagine it would be.

Johanna February 16, 2010 at 6:28 AM  

Tia, you and Christopher are VERY strong individuals. Just looking at those photos of Charlie brings tears to my eyes. I am so sorry that you have to go through this, and that Charlie has to go through this. I will continue to pray for you and keep you all in my heart. Please keep us posted. xox

alita February 16, 2010 at 7:23 AM  

You do what you must for what is best for your child, but that doesn't mean that it doesn't break your heart. I remember having to take Anthony to the hospital for the first time and our over night stay. So wrenching! It is so hard to see your baby boy hurt in any way.

Hugs to you from me...

Shannon February 16, 2010 at 7:37 AM  

Those pictures brought tears to my eyes. I can't imagine what it must feel like to be going through this, but I'm glad the doctors are doing everything they can to find out what's wrong with him now. Stay strong, Tia! I'm still keeping your whole family in my thoughts.

Anonymous,  February 16, 2010 at 8:14 AM  

You are one tough broad, that's for sure. I got teary looking at those pictures, I can't imagine how you held it together. Amazing.

Christina February 16, 2010 at 8:20 AM  

*sigh* it really is so hard when our kids have to go through those things. :( Kavi had to have a small surgery when he was 8 months old(he had an issue with hypospadia) he had to go under anesthesia and we couldn't be with him during that, and when he woke up after the surgery and we got him it was so hard to see him. Then a year ago the Dr wanted him to get an MRI bc his head size is above the charts. Nothing was wrong though, but we had to hold him down for an IV and such before they took him away from us for his MRI, again having to be put under.

I am so sorry you are all going through this, esp Charlies. May they figure out things soon!!

Kyla Roma February 16, 2010 at 9:08 AM  

Oh what a horrible experience, you are so strong miss. So glad that you guys are doing everything you can to get this figured out- I can't imagine how scary it all is <3

That 22 year old housewife... February 16, 2010 at 9:36 AM  

I could never imagine going through this with my children ... you are a strong women to be able to handle this. Your blog is quite inspiring and i look forward to new posts often. You and your family are in my thoughts and prayers.

Anonymous,  February 16, 2010 at 9:48 AM

You're getting a flaming.

Beki - TheRustedChain February 16, 2010 at 9:55 AM  

You are SUCH a good mom!

I'm glad you took pictures because someday that might all be a blur and it will be nice to have those to look back on. Show Charlie where he's been and what he's achieved.

I love the picture of him with his little doggy (bear?) snuggled up next to him.

You're a great mom!!

Olivia February 16, 2010 at 10:01 AM  
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The Perfect Trio February 16, 2010 at 10:22 AM  

You are so strong! I don't think I would have been able to fight back tears until he were asleep.

I'm so glad you have pictures. I have pictures of my son when he was 4 months old and in the hospital for pnuemonia. His daddy was in the field training and wasn't able to be there with us. I wanted to show him what a trooper Jake was and I also wanted to have those pictures to show Jake when he grows up. I would document EVERYTHING with photos if I could and thought of it in time!

Sara February 16, 2010 at 10:38 AM  

Holding your child down when all you want to do is scoop him up and run away from those people messing with him is the hardest thing a mother can do. I had to hold Monster down while they took blood from a vein in his head when he was just a few months old, and it just about killed me. I'm glad you had Christopher there with you.

Olivia February 16, 2010 at 10:41 AM  
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Tia February 16, 2010 at 11:00 AM  

Tia, that is so hard, and I had to fight back tears while reading and seeing poor little Charlie like that. I'm so sorry and wish no one ever had to go through this with a child, or to have to deal with people talking about you behind your back when they don't know the entire situation.

Hobocamp Crafts February 16, 2010 at 11:02 AM  

I'm so sorry this is happening. I was in the ER on Friday with Hazel and I knew what happened and what the next step was and I was still very scared. I can only imagine what you are going through. Sometimes we have to keep those game faces on for our kids ( which I did on Friday) and damn that is hard. Know you are all in my thoughts. My nephew who is now 6 has seizures often and they working on getting to the bottom of it. This website- the man is a friend of my husbands and he has a lot of great resources- maybe some of it will be helpful. xo we love you.

Oh Mandie! February 16, 2010 at 11:16 AM  

Charlie is such a brave little boy, and despite this being a awful experience for him if in the end it helps to find out what is wrong then its all worth it in the end.

You're a good mom Tia, and that little boy is so lucky to have an attentive mother like you who was wise enough to know that something serious is going on with her child and sought out a second opinion. You and Christoper are amazing, strong, and capable parents. And even in those dark moments don't you ever forget it!

My love to you and your family :)

Casy Schweickart February 16, 2010 at 12:36 PM  

Poor baby...he'll want that picture later when he is older. I am glad that is over for you and my heart is with you and your family. I hope you find out everything you need.

Ashley Stone February 16, 2010 at 12:40 PM  

I'm so sorry you all are dealing with that! Those pics are heartbreaking. Thinking of your family, hope he is all better soon!

Heidi V February 16, 2010 at 1:07 PM  

I don't know you I'm just a follower of your blog...I feel for you, my son has a seizure disorder started two years ago at the the age of 12. You and your husband are both very strong that strength you have is going to help you both. I can't say I know what you felt but I know what I did and I feel so bad for you and your family.

considerthelillies February 16, 2010 at 2:12 PM  

Hi! I am Christina's (consider the coffee)mom and I want to tell you that you are such wonderful parents, I read your blog all the time even though I am an oldie! Charlie is so precious and makes me think of my grandson Kavi. I will pray for all things to be well with him and for there to be answers soon! Your kids are lucky to have a mom and dad like you guys!

alysiajuanita February 16, 2010 at 2:25 PM  

Your family is in my prayers!

You are such a good mama & such a strong woman. I hope that if I was put in the same situation I could handle it as well as you did.

Christina February 16, 2010 at 2:47 PM  

I didn't think anything negative about you as a mom when I saw the photos of Charlie(I see the edit you posted). So just know that for me, and I am sure for others, that kind of thought about the photo didn't cross my mind one bit!!

Tammy February 16, 2010 at 3:03 PM  

I am so sorry that this happening to your son!
I don't have any children yet, but I think I would have a total break down if this happened to one of my children.

You and christopher are incredibly strong for dealing with this the way that you have. Please know that I will be praying for your son and for you and christopher to continue being strong.

BeckyKay February 16, 2010 at 4:21 PM  

Oh, honey! I'm going to be praying SO HARD for you all. That just breaks my heart! I'm practically in tears just from reading both of your posts.

CraftGirlAlli February 16, 2010 at 7:08 PM  

Oh gosh Tia! I wish I could do something to help. What a rough day. Reading this brought tears to my eyes. I know all too well how you feel. Colby went through heart surgery. Those feelings and emotions you talked about, I've been there. I know we don't know each other too well, but if you ever need to talk, just email me! I found great comfort in talking with people who had been through similar situations.

soul_searching_mama February 17, 2010 at 1:17 AM  

It was hard even for me to see little Charlie in discomfort. :( I can't imagine how difficult that was for you! I am praying and hoping that you guys get some answers and that Charlie is able to get some relief from his seizures. I am so so so sorry you have to go through this. :(

And to whoever was bashing you on that other site - shame on them.

Bathtub Bling February 17, 2010 at 1:16 PM  

Tia your posts about Charlies seizures have me in tears. Its so hard to not know whats wrong. I think you and Christopher are being so incredibly strong and handling this difficult time the best way that you can.

When my son was 2 he got the flu and ended up being admitted to the hospital for severe dehydration. I wish now that I'd taken pictures because he asks what he looked like. He asks so many questions about those 4 days and even though I can describe to him what I remember (12 yrs later), he still wants to see. I think you are so incredibly brave for taking the photos and for sharing them.

I'm keeping your family in my thoughts and coming back daily to see how everything is going. Please don't change anything about how you blog and take photos of YOUR family.

NotSupermom March 3, 2010 at 4:50 PM  

Hi Tina,

Just wanted to leave you a note... We went through a short EEG with our first child about the same time you did with Charlie. My son is almost six, and we were ruling any abnormalities *out* because he was having migraines. Little did we know. He's now been diagnosed with generalized convulsive epilepsy. We're scheduled for a 24 hour EEG in April.

I wanted to let you know you're not alone. That I'm reading your posts, and feeling your heartbreak. And if there's anything you should ever need, please don't hesitate. Knowing we're not alone is such a big deal.

Hugs, M

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