Thursday, July 3, 2008

Jaw Distraction Surgery - Phase I

The surgery to place the distraction device went well. (Minus a trach mishap which ended in Cicily having to be intubated through her trach stoma for 18 hours and subsequent drugs to sedate and paralyze her.) But, overall Dr. Singh was pleased with how she was able to place the distractors. Cicily had her usual fighting angry time the first 36 hours after surgery, but is now home and sleeping peacefully in her own bed!
I want to post pictures for those who are interested and hopefully to help other families get a better idea of what distraction can be like. Friendly warning though- if you are extremely faint hearted, you may not want to look closely.


The anesthesiologist let me take Cicily to the OR this time and help her fall asleep happier. She was nervous about the "bunny gown" until I smiled at her and signed, "silly Mom" and that made her smile. I think she still sensed something was up though.


A few hours post op.

Still intubated and paralyzed. If there's one thing I could possibly dislike more than the trach- it's the ET tube (being intubated)!

About 24 hours post op.

Finally awake and returned to the trach so she can have a good snuggle before zonking out again. Quite a bit of swelling in her face.

36 hours post op.

A good look at the distractor "screws/keychains/beard" as we fondly have been calling them. The sore on her lips is from cranking her mouth open so wide to position the plates and screws.

48 hours post op.

In the car on our way home from the hospital!!!

48 hours post op.

Home again and smiling. Can you get any more tough and pleasant than that?!
Certainly not back to her normal Cicily self, but MUCH better than yesterday!

12 comments:

Susan said...

You don't know me I view you blog through Katy Olson, I'm her mom. Cicily is such a cutie, and such a trouper. My niece had some problems when she was born that required her mother to be really intrusive to care for her needs. It's funny how God makes these little kids so strong, with the ability to just bounce back to their spunky little selves. Good luck with her care. My thoughts and prayers are with you and your little family!

Lisa said...

Wow she is a little trooper. She's very lucky to have parents and a sister who care so much about her. Give Cicily a hug from us we wish we could be closer to see you guys more often. I hope everything goes well with her recovery. Your family is in my thoughts and prayers.

Teri said...

I didn't know the "screws or beard" were going to be so long. They look like they would be so uncomfortable. I hope everything goes great and they are as effective as they should be. I heard about poor Cis having to be asleep for so long. Too bad. Love you guys!

Ondriawfd said...

I'm so glad to know that everything went well. I have been thinking about Cicily a lot this week. It was interesting to see the pictures, but Janalyn. . . I don't know how you do it. Just looking at the pictures made me cry. You are so strong!! She's definately got a GREAT mom. How do you keep her from falling on those screws? I don't think I understand the jaw distraction because I thought she would be wearing some kind of head gear thing. I guess I'll have to go back and look at it again. Love you.

Shane Meredith Mason and Kendall said...

Im with Ondria...on a few things.- How does she not fall on the screws? they look SHARP. Also, I thought she was going to have something else..or is that later (head gear). And you are SUCH a great mom. you can just see the love in your eyes...im not surprised though. You have always been great :)
You are so lucky she is such a trooper!

shannon said...

I'm with your sister too....what a GREAT mom! It brought tears to my eyes too. She's one of those little precious kids I see at Primary Childrens' that help put life in perseptive. What a special girl you have!!! Hope everything continues to go well. She looks great only 48 hrs later! Your family will continue to be in my prayers.

Fabiane Snell said...

First of all, please give Cicily a BIG kiss and lots, lots of love for me would you? I wish I could do it myself. I really think that she is AMAZING! And you J, an incredible mother! The pictures made me cry..she is so blessed to have you!My prayers and my thoughts are with you! I love you guys VERY MUCH!

Brittany Arnett said...

J - I'm glad you guys made it through another surgery! It was fun hanging out at Jewelia's shower. Did you hear that Rachel's engaged? AHHH!!! We need details. Let me know when you're ready for a slide day.

St. Jeor Family said...

O Janalyn! You really are a very strong person and great mother. I don't know how you do it. I hope that her recovery continues to go good. She really is a cute little girl! Maybe one day I will be able to meet her and see you again.

Katy said...

Oh that breaks my heart. Cicily is so tough!! It hurts just looking at it, I can only imagine how it was for her. She's darling.

Lisa said...

cicily is such a strong, beautiful little girl, Just want you to know you all have been in my prayers and I understand what your feeling and what your going through, My daughter has the same syndome and she has had 2 jaw distractions all before she even turned 2. Best of luck. what a little fighter you have...
Lisa Taylor
Avas mommy!!

Heidi Ann said...

This hurts my heart. What a brace little girlie, she is so impressive. So sad that she has to be put in pain to make things better and she smiles through it all.