Sunday, April 5, 2009

Not for the faint of heart.

I met a  friend of mine for lunch yesterday. She has a daughter a little older than Ava, and a two year old, Jillian, who has cochlear implants. We were meeting to let the kids hang out and to discuss last minute surgery stuff. My friend, whose name is Andrea, is someone I met before Seth was even officially diagnosed as deaf. She was definitely one of those people that God literally threw into my path and let me trip over on this journey. Just after we met we spent a weekend together at a conference, and had some great instant bonding. So we're pretty close.

We were discussing little stuff, like what kind of clothes to pack for Seth, what he'll look like after surgery, etc. Then she asked me if I'd ever felt Jillian's head.

Well, no. That was something I'd been avoiding. All the surgeon's say that they place the implant as close to flush with the skull as possible to avoid the implant sticking up past the skull. I had not yet been brave enough to feel the heads of the CI kids I know. Kind of like how after I had my first baby, I refused to touch or look at my own stomach for days because the squishy feeling of it wigged me right out.

Andrea laughed at me and whipped Jillian's implants right off and said "Feel them! You've GOT to feel them."  So I did, and while it wasn't terrible, you could definitely feel the implants in there.I can only imagine what Seth's fair, bald head is going to look like. He's always had such a nice round head...this is going to be hard to get used to. I had kind of a reaction to the bumps, and Andrea said "I know. Sometimes when I go to bed I start to watch the surgery online, and I haven't been able to make it all the way through yet." She advised that I definitely wait to watch the surgery with all it's gory details until after Seth is done with this surgery. "Oh yeah!" I enthused. "There's no way I'm watching that now...it would just freak me out."

I think we all know where this is going.

This evening, I locked my older kids outside, told them to jump themselves sick on the trampoline and not to bother me (Yes, I did make them wear clothes. I know you're wondering). Seth and I sat down in front of the laptop and prepared to dive in. I thought about making popcorn, but thought that might be pushing it. Like a kid who can't help telling on themselves when they do something they shouldn't do, I texted Andrea.

Watching it. The whole thing. I'm doing it. Don't try and stop me. (Please stop me.)


Alas, she didn't stop me, and Seth and I hit play on the video of a cochlear implant surgery done by the same surgeon who will be doing Seth's surgery, Dr. Loren Bartels (You should watch it if you have a spare hour, then you can talk to me about it. We can have a club).

The first couple of minutes were tough, as they made the first incision and started digging around. But the further they got into everything, the less I recognized anything, and it got easier to watch. There's a lot of drilling, and suctioning, and a lot of talk of avoiding this nerve and making a hole between these two very important bones. It looks vaguely similar to playing Operation, although instead of a buzzer going off if you mess up, the patient loses the ability to control their own facial expression. Yeah! Nothing like a little pressure to get your juices flowing!

The surgeon talked through the entire surgery, giving a running commentary of various parts of it. It made me wonder if he only does that when the surgery is being taped, or if that's just one of the things that keeps him on task, like when I try to make myself remember a phone number by repeating the last four digits over and over.


After they drill a "bed" for the implant (pictured above with a nickel so you can have an idea of size), they stick a little tube that has the tail of the implant in it in the hole the surgeon drilled, and wind the electrodes (placed in the tail you see above) through the cochlea in a spiral. Then, it's pretty much over. They fill the hole that was drilled in the inner ear with tissue, sew everything up, and send them on their way. The patient goes home, heals for four weeks, then comes back to get activated, receive their outer processor, and hear for the first time.



I made it through the entire thing. Seth was unmoved...he was more interested in playing with an empty Gatorade bottle than paying attention to the surgery. I tried to tell him that he was going to be sorry he didn't pay attention, like he couldn't hear me or something. The surgery didn't bother me too much...I feel a little better knowing what's going to be happening on Thursday. I was picturing it being worse, although to be honest it does all look pretty bad.

We'll see if I'm still feeling so blase about this on Thursday. I'm thinking no.

17 comments:

avbernat said...

I can only imagine the anxiety that you are feeling right now.

I thrive on surgeries and real life medical trauma, I watch the shows and there was once in my life where I wanted to become a surgeon. I still do. But when it comes to my own flesh and blood, I cringe at the thought of knife going at my children. My son Matthew, will have reconstructive surgery for his new ear in a few years, I don't even want to think about the trauma I will be going through, I think I may need some therapy afterwards, HAHA! But I think the one thing that keeps me motivated and upbeat and not implanting the fear I have in my son is that in the long run this will benefit him.

I am so excited for Seth to hear your voice and to interact with his siblings, to first hear the natural surroundings around him, and to hear the breezes of the wind that delicately touch his face.

I'll be praying for all of you, for the strength and wisdom of the doctors, for the speedy healing of Seth, for the calmness of your anxiety, and for a future that will be ever so exciting for Seth.

Keep us all updated!

Analiza

Holly said...

I hope everything goes well!

I'm glad you felt better after watching what is going to happen to Seth. I can see how that would help. :)

bethany1699 said...

I'm so happy for Seth! I think you should take a picture when he gets to hear for the first time, imagine the look on his face!

Anna said...

I can only imagine the nerves! I will be thinking of you and Seth. I can't wait for that post that says he can hear! I have to say I wonder if he'll have trouble sleeping since he'll be hearing new sounds in the house and such. What an experience! I couldn't imagine what it would be like to hear after not hearing ever since I could remember. Amazing.

Emily said...

I can't even imagine the anxiety you feel as a parent going through this. But, as the daughter of a vascular surgeon, I can tell you that surgeon's can do wonderful things that we can only marvel at. I will be praying for you, your family, and the surgeon. Isn't it amazing that God has given us this wonderful technology?! I healing miracle within itself!

Here It Comes said...

No way would I make it through a video! After Emmi's first implant surgery, the surgeon walked out with a big grin on his face. "Want to see the pictures," he asked, throwing down the pictures without waiting for a response. It was not a close up or internal pic. Oh no. It showed her whole head mid surgery! Kenny and I both simultaneously gagged! The second time around we warned them, "NO PICTURES!"

Tricia

by: Allison said...

WOW!! I can't wait to hear from you after the surgery. How long will Seth be in the hospital? Thoughts and prays are headed your way!

Aunt of 14 said...

I definitely have that bump on my head where my own CI is. It really isn't too bad once the hair grows in.

Mommy Marta said...

I will be keeping you and Seth in my prayers this week.

Shanda said...

I am praying for you all - information/knowledge can be very helpful so you don't have that completely freaked out moment about what they are in there doing with your baby...but don't allow yourself to dwell too much on it all. At least it is only a few short days away!!!! I'm still just rejoicing at God's path in all of this.

BIG HUGS!!!

Sarah said...

Gosh - I'm so excited, nervous, happy, scared - just a million things for you and sweet Seth. Please know we are thinking about you and sending lots of good thoughts your way.

Love, Sarah & Sully

Anna said...

So excited for you guys. For us, the worst part was Ally coming out of the anesthesia. She was not a happy camper. Thanks for sharing your journey with us. :)

Rose said...

What a beautiful gift you are giving sweet Seth just by being his brave mama! Good for you for watching that video. I'll be waiting with bated breath for an update on Thursday!

Erica said...

I am a firm believer that knowledge helps eliminate fear, or at least a lot of it...so I am praying that you seeing the surgery will help you on Thursday! May you be covered and smothered in the peace that only Seth's Creator and our God can give! You are brave and strong and Seth is so very blessed to have such advocates he can call Mommy and Daddy. Praying you through!!!

Ashley said...

I've been following your journey for a little while now, but never commented. I just wanted to say that you and your family will be in my prayers this week as Seth gets his cochlear implants! I'm starting grad school in the fall to become an audiologist and my dream job is to be able to work with children who need/have cochlear implants! I think the whole process is just amazing and wish Seth the best as he gets his implants in and when they are turned on! :)

writing4612 said...

Even though I have had many surgeries, there's no way I would watch a video of a surgery I was about to have.

It would just make me more nervous. I would've taken Andrea's advice. You'll probably be thinking about every little step and what could go wrong during the surgery. I hope you don't dwell on it too much.

Yes, surgeons usually talk during surgeries, mostly to keep all of the nurses in the loop about what he's doing. I think also kind of like a checklist.

I'll be waiting on an update!

Diane said...

I am so glad you have a friend who has been through this. God always thinks of everything!! I hated the thought of taking the bandages off my son the day after surgery. It wasn't bad at all. Just a few specs of fluid on the bandages...not lots of blood like I imagined. I will be praying for you tomorrow. God Bless you!

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